Data Sharing (v1.0)
Research type
Research Study
Full title
Investigating service user opinions on clinical data sharing
IRAS ID
275457
Contact name
Til Wykes
Contact email
Sponsor organisation
King's College London
Duration of Study in the UK
2 years, 1 months, 17 days
Research summary
Patient data can help drive scientific advancements and innovations to improve patient care, but this means sharing patient data between different organisations. We know that that people with depression, epilepsy and multiple sclerosis all have concerns about how their data would and should be used in health services, but these have not been explored in depth and we do not know what service users consider are acceptable limits to sharing their clinical data. To facilitate responsible data sharing, we need to develop systems that work for everyone. In this project, we want to:
1. Understand service user views of clinical data sharing;
2. Identify ethical structural constraints for data sharing systems;
3. Identify ways for future data sharing systems to ensure their effectiveness.Through this qualitative research, we hope to gain information from service users on the limits of acceptable data sharing of clinical data.
REC name
East of Scotland Research Ethics Service REC 2
REC reference
20/ES/0004
Date of REC Opinion
13 Jan 2020
REC opinion
Favourable Opinion